Side Effects of Neridronic Acid – Neridronate

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Neridronate

Neridronic acid

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This is a long response to detailed comments from Julie who had a reaction to the neridronic acid protocol for CRPS.

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The clinical trial on neridronic acid is extremely important and unique. It is important because it does not just cover symptoms, it actually may put CRPS into remission.

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If I had CRPS, I would not hesitate to accept short term side effects if I thought I could get long term benefit, even possibly remission. We need this study. It will not be available for anyone unless many enroll in the double blind study and hopefully soon so that results can be submitted to the FDA for approval.

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Please read her comments first, at the end of my post. And then my comments below.

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And because neridronic acid relates to bone metabolism, much later I will mention an area of research that is likely to be be valuable because it is the largest receptor system in the body, the endocannabinoid receptor system, the body’s own cannabinoid system. Two ideas from Raphael Mechoulam, professor of Medicinal Chemistry at the Hebrew University of Jerusalem in Israel are keenly interesting:

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The Skeletal Endocannabinoid System

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The Entourage Effect

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Glia make one of the cannabinoids in the brain, and glial research is where I suspect some of the best research will come

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Hopefully these ideas will stimulate research.

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In response to Julie, I wrote:

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Julie, I am so sorry to hear of the difficulty you had to go through for such a long time. And relieved that you got through it. I and, I’m sure everyone else, thanks you for volunteering. We will all benefit. And we all hope that if any reaction is to occur, please let it be rare. It appears that yours is rare.

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I know everyone is with you, and we bring all our hopes for the unknown. No one has the answer of what to do with intractable pain of any kind, not just CRPS pain. We must, MUST, begin to do more research on intractable pain in humans. Neridronic acid is an important beginning to look at a new mechanism.

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CRPS has, in some people, escaped every known rational approach to treatment. Neridronate may be the best thing we can get. It takes time to learn how new medications work, and they have chosen wisely, I am sure.

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Be assured, I think good minds are working on the best. But it is unknown territory. Numbers are needed – CRPS can be very dynamic. Flares and remissions wax and wane, so long term study must be done.

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We all see patients after CRPS flares and there is nothing more to offer. Not one thing. We urgently need something that works. We are hoping neridronic acid will be that rescue.

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Will remission last 12 months or 3 months or less?

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What are long term risks?

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How often could it potentially be given, or will remission really last for years in some? We all need to see numbers.

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Huge hopes are on this drug.

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We must balance hopes and fears.

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We recognize it is a new drug for a new purpose. We hope this research will drive many more studies on CRPS and/or intractable pain.

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Julie, thank you for allowing others to see details. It may help other volunteers to set aside time to recover any post infusion effects, if needed. Hope for the best, plan for the worst is the saying.

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No one yet knows how good the potential is for duration of effect. Remission could potentially be total, in some. How many?

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We are all learning how to treat chronic intractable pain.

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Skeletal Endocannabinoid System

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The highly decorated scientist who discovered THC and the body’s endocannabinoid system, Raphael Mechoulam, professor of Medicinal Chemistry at the Hebrew University of Jerusalem, recently mentioned the SKELETAL CANNABINOID SYSTEM in a 2014 documentary on his discoveries.

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The cannabinoid system interacts powerfully with the immune system in ways not yet studied. Why does your CRPS immune system affect the skeletal system and create pain?

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Cannabinoids are anti-inflammatory, analgesic, healing. The body makes its own. We need to study the biggest receptor system in the body. It is a gaping hole that is left out of existing work on the immune system.

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And how much are glia and our innate immune system in CNS— how much are they studied?

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Please let there somehow be funding for many studies on humans – but let’s begin one study, guided by Distinguished Professor Linda Watkin’s lab. She is the only scientist who is doing translational work from basic research in the lab to humans.

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Professor Watkins has the best clinical solution I have seen: IL-10 has remarkable potential to bring your pain to zero for 3 months or more at a times. Your brain makes it. It is *the* anti-inflammatory cytokine. Her lab has been the world leader in glial research. Where is the funding for what may be the most important area of work for intractable mood disorders and treatment resistant depression?

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Glia

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How do hundreds of now usable drugs create pro-inflammatory cytokines thus make more pain or more major mood disorder?

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And which of these hundreds of drugs on our formulary reduce inflammatory cytokines?

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What is the role, if any, of some of the medications used by rheumatologists to dampen the hyperactive immune system in autoimmune disease? Risks, but possible gain. We will never have all the answers. ALL the answers for everyone is hard to imagine.

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How do hundreds of existing drugs affect the balance of CNS cytokines?

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Skeletal Endocannabinoid System – see Raphael Machoulam’s lab in Israel. May be critical for CRPS and for osteoporosis in seniors.

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Mechoulam’s lab would bite at the chance to get funded to work with the Italian and USA CRPS study.

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Julie — I am heartened that you may be able to see Professor Ott who may be one of the foremost researchers on bone metabolism if not number one.

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I posted three times on bisphosphonates last year and hope they are a good review for others.

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The Entourage Effect

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Mechoulam also has an important concept that probably applies to my method of trying to modulate these powerful intractable pain syndromes.

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Simple concept – brilliant:

The Entourage Effect. Drugs are like politicians. A famous politician may walk unrecognized, but when you surround him or her with many people, even of lesser status, the politician has a far more powerful effect.

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I don’t know how you guys do it.

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Respectful best wishes.

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I know some of you ignore this, but I have to repeat:

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The material on this site is for informational purposes only.
. It is not legal for me to provide medical advice without an examination.

.This material is not a substitute for medical advice, diagnosis or treatment provided

41 Responses to “Side Effects of Neridronic Acid – Neridronate”

This is Julie from the phase 2 neridronic acid trial. At 9 weeks post infusion I relapsed, as we were only given partial doses. At 19 months post onset, I travelled to Verona, Italy where I received 400 mgs. The second course of the medication gave me no side effects. None. Which is normal. The second course didn’t have the same profound effect on the pain as the first course. What it did, was to heal the osteopenia in my CRPS foot and heal the stress fractures completely. I now have no sign of osteopenia. I still have the neuropathy, heat, pain and swelling. The pain isn’t as intense. They told me in Italy that CRPS causes bone marrow edema, which the neridronic acid cures. So now, I run 5 miles per day, but only with Vicodin. I still use it to be functional and to sleep. I completely disagree with those who say that opiods don’t work. If I even tried to walk 1 mile without opiods, forget it. I can barely move. After the opiods, I can run up to 7 miles. I still get my bad, hot and painful flare every night around 7 pm. My new medication that I am working up to 40 mgs is called Memantine. When I increase my dose, I get a huge decrease in pain, but 5 days later the pain is just as bad. Then I increase the dose by 5 mgs and it goes down again. I’m only at 15 mgs. but I’m hoping that the pain free days will become longer. I have been studying the NMDA antagonists. I have a strong suspicion that nericronic acid is a NMDA antagonist and that’s why it helps initially with the pain, but then the effect fades. There is a phase 3 starting with the full 400 mgs and no placebos. I strongly recommend CRPS patients try it.
Thank you

Memantine is excellent – it blocks the NMDA receptor, as does ketamine. I generally take dose to 55 mg/day.

Movement, activity is essential, no matter how, just begin, even if it requires opioid. It may be one of the most important things to do, but we have to look at everything that helps.

Opioids – very difficult subject because they increase pro-inflammatory cytokines in brain, which increase pain.

Taking opioids and doing nothing is a downward spiral that is nothing but grief. Have a plan, stay active, use the power of the brain to dissociate from pain, meditate, use guided imagery, medication, P.T., and try to find as much joy as possible to turn this thing around.

You are doing many things that help. That’s important.

Neridronic acid is a bisphosphonate. I’ve posted on them several times in the last few years.

For Nancy or anyone who may know, what if any info can you provide me with, that relates to combined IV treatment will neridronate and ketamine? I’m not referring to both drugs via one IV ;), rather…do you know of the potential for greater success with individuals who get both IV protocols either during the same tine period or within a few months of one another?

I’ve long been a candidate for IV ketamine, however, the insurers have done a fantastic job of delaying the treatment for any number of reasons. I may be able to get it very soon though…but I’m curious as ketamine efficacy during or near a nerdridronate protocol.

This is a great question and I would really love to hear someone’s thoughts on this as well. I am currently debating whether to try Ketamine IV for the first time or just to go with the Neridronate trial instead. It would be interesting to see whether somehow doing both would be more effective or even possible.

Depends on how long the trial needs to follow you, which may prevent you from starting any other new therapy for months or possibly one year.

By all means begin the trial – we need the data urgently. We have so little data.

We also need data urgently for Ketamine protocols, both nasal spray that I prescribe and IV that is given by all others.

Everyone is different (MD and patient) and there is no agreement on any protocol, as of the RSDSA meeting on ketamine in Chicago June 2016.

Ketamine is not the one and only medication that is a glial modulator. I have worked with people who became resistant to ketamine or in whom it never worked, but became pain free in total remission or partial remission using glial modulators.

We need data on glial modulators.

We need data comparing outcomes of patients in trials who are taking opioids and those who are not.

The reason some of my patients completely failed IV ketamine (e.g. after 9 trips to Philadelphia) is they were taking opioids. The minute off opioids, within 5 or 6 days body temp was no longer decreased 15 degrees in the right leg. Opioids cause inflammation that causes pain. Ketamine reduces inflammation. Those are opposing goals and make no sense, but that is done all the time in every university center: give opioids for chronic pain. My patient’s responses are clinical examples of how it is possible to modulate the pro-inflammatory cytokines in the CNS, to restore balance. The science is not being applied since discovery of the innate immune system that has led us to new paths in treating chronic pain, that most difficult of all: chronic nerve pain.

But clinical medicine is stuck in giving opioids for chronic pain, something that began only recently in 1991, reached a peak finally by about 2010 to 2012 during the huge push by all the opioid making pharmaceutical companies that sprang up — one new costly opioid after another and another and another, $17,000 a month for one pain med, more opioids popping off assembly lines every year till slowing down now after worldwide shock seeing the vast engulfing opioid epidemic in the US.

European countries never gave opioids like we did. They don’t have our opioid epidemic.

We need more research in basic science of the pain matrix; AMPK research in particular seems one of the strongest new areas likely to prove clinically helpful for pain relief.

Diet, choices of food whether pro or anti-inflammatory, exercise — keep the body moving— and a whole host of things to follow are enumerated on my post of 11/6/16. CRPS is a systemic condition that can potentially affect organs. It is one of the few chronic pain syndromes that can potentially be placed into complete remission. No one knows the best way, and a huge budget cut to NIH is coming. Unprecedented. Just like 2010 huge NIH budget cut had never been so big in history. All the money to the 1% who caused the worldwide crisis in 2008, now in their hands again demanding to defund science.

I will be going forward with IV ketamine soon, assuming the Neridronic acid infusion doesn’t produce increased benefit (I’m currently about 1 month post 4th infusion). Obviously that doesn’t allow me to give info on concurrent treatment (which I doubt any two doctors would approve of anyway),but I’ll have info related to adjacent infusion protocols.

The Neridronic Acid infusion I had provided very limited scope of benefit, only reducing allodynia in certain locations. I’m comfortable wearing certain clothing now and I don’t get so much reactive pain when my daughters are trying to climb on me or when I feed them, etc. But I’m still experiencing so many other symptoms, everything is for the most part, still getting worse. But keep in mind, I entered this infusion way late in the progress of this disorder. If I had the opportunity to do it maybe 4-5yrs ago, I’ve no doubt it would have presented better chance of overall success.

I have never seen a difference in response comparing 40 year history with 20 years, 4.5 years, and very recent onset.

I have seen no way to predetermine who will be a responder. Keep in mind, I generally see patients who have failed every common treatment including IV ketamine. The difference is that my patients have not received glial modulators, medication that reduces inflammation in the CNS – the pro-inflammatory cytokines that create pain.

My wife was diagnosed in September of last year in both of my hands & wrists. We went to Bologna Italy for the neridonate treatment the first of January. She started feeling better after the 2nd treatment! She was taking 4-5 opiates a day. She is now almost completely better! She’ll have a little bit of a setback every now & them but she can’t remember the last time she took a pain pill. She can open car doors, water bottles, write – all the little things you don’t think about until you can’t do them.

Did you receive the full dosage of 400mg of the Neridronic acid? It seems it is also supposed to provide more benefit at about 2 months post the 4th infusion, just according to the initial study done in Italy. What other CRPS symptoms do you have that it didn’t relieve? I have severe allodynia as well.

Please keep us posted once you get the IV Ketamine. I decided to do the study but I have to meet some protocol requirements so it will not be for approx. 60 days. Initially, they had said no medical cannabis and I was seriously considering not participating because that it is all I use for pain, I have come off all meds after 6 years. But they said it would be okay when I went to see them yesterday. My CRPS start date is hard to pinpoint because I had been masking the symptoms a lot with Gabapentin for years following 3 thoracic outlet surgeries but it did not spread or get this severe until just earlier this year. According to the research, it shouldn’t matter how long you have had it as Dr. Sajben mentioned.

Parveen…your story seems to closely resemble my own :). I had a right 1st rib resection and scalenectomy a few years back. I developed horrific nerve pain as a result. I initially demanded that I only treat it noninvasively and did PT for a long while, but my blood supply was cutoff by 70%, so it was turning into a scenario where I was at high risk for a clot. Now I have CRPS like symptoms in that entire quadrant, all down to my right hand as well…but I don’t dare say the name CRPS to people about it because they resort to the mantra that CRPS can only occur in one place. Of course, what I’m feeling, what I’ve seen happen in my arm, those are arguments to the contrary.

The symptoms that the Neridronic acid infusion did not attend to with me (and yes, my infusion was 4 x 400mg): deep pain signals, banding/ radiating pain, shooting pain, temperature sensitivity problems, spasticity/ jerks (myoclonic activity). Although, I go for an EEG tomorrow AM because my neurologist wants to rule out any underlying epilepsy, due to the unusual nature of my jerks (I have Hypnic jerks where I lose consciousness and stop breathing, even if just for a second or two…but I get them multiple times a day).

I’m still only a few months into the Neridronic study, so I’m not sure what the response curve is on average, but if the peak for maximum response has already occurred, then what it did for me was limited… BUT,having my skin be comfortable in clothing, having the ability to hold my daughter on my lap, etc…these are things that I thought I’d never be able to do again and it brings me to tears each time I’m able to without pain/ severe discomfort.

Hi David. I’m sorry about everything you’ve been through and continue to try to resolve. I also had a scalenectomy which resulted in a long thoracic nerve injury with a pec minor tenetomy, then a first rib & cervical rib resection which resulted in a seroma and veins getting caught up in the mix which ended up in a 3rd surgery over 3 years, all on my right side. I have not been the same since the first surgery. I have quite a few other things going on at this point too, and my CRPS originally started in my right shoulder and arm/hand as well but now it is full body. I’m hoping the Neridronate infusions will help resolve some of the allodynia and pain especially since it’s throughout my body – I actually have nerve pain in my stomach now no matter what part of my body you touch it shoots to another area and not necessarily the opposite side. I was leaning toward doing ketamine infusions but then I recently learned about Neridronate and the trial here. I have jerks as well mainly in my right arm but not as severe as the ones you describe. But I also have a lot of joint pain and stiffness in my right shoulder and occipital area of my head and neck and I doubt Nerirdonate would do anything for those issues. I am considering PRP for those since I have already tried nerve blocks, Prolotherapy, acupuncture, cupping and PT as well. I am currently seeing a Neuromuscular therapist who does manual therapy for 90 minutes twice a week, but I keep ending up back where I started each visit and leave with a lot of my nerve pain flared up.

There is a girl who flew to Italy for the Neridronate infusions and is posting about it on a Facebook group. She says the doctors say it will take 6-8 months for full results. Hopefully you will see more signficiant improvement over the next few months.

Hello all…thank you to everyone who’s commented (very valuable input) and shared experiences (also very valuable!). I am about to begin the trial treatment with neridronic acid for CRPS. I developed CRPS as a result of severe nerve damage in my groin from a failed R inguinal neurectomy…the fallout was significant, causing a multitude of pain symptoms that spread through my genitals, hip, thigh, down to my foot, etc. Over the past 11yrs, I’ve battled with the idea that this is a condition which I may never be able to suppress or recover from to regain my former life without pain…so I have decent hopes that this treatment can yield some reward.

I’m encouraged to read the words “endocannabinoid system” above…because that is the focus of the field in which I’ve been studying and working for over a decade (I provide consults to individuals, with a focus on nutrition and achieving wellness through use of botanical extracts and supplements). I’m a former classically trained chef with additional nutrition education, so following my 2004 work injury, I utilized my knowledge to focus on the health and wellness benefits of exogenous cannabinoids as seen in treatments that utilise cannabis as a nutritional source. I’ve been blessed to have my work be evaluated and my methodology be supported by individuals like Dr Courtney and Dr Allen (ICRS published researcher). There isn’t nearly enough focus being given towards caring for and maintaining the wellness of the ECS…in the medical community or elsewhere. I’m happy to see this come up more often in conversation recently about CRPS, as it is becoming more of a proper and justified talking point.

I look forward to sharing my treatment results with you all. It is important that we can come together and share experiences!

My daughter is 15 yrs old and has had foot severe foot pain for three years, we have been chasing this for awhile. She was an Irish dancer and MRI showed previous fracture and stress reaction. Last year we received the CRPS diagnosis, did every natural therapy first and then reluctantly tried Gabapentin, up to 1400mg no change in pain and negative side effects of flu like symptoms with severe vomiting. She is off the medication. I recently have read about the Neridronate infusions in Italy because the Doctors are nice people here but have said point blank, there is no cure. Not sure where to turn to next but the internet for information. Would love to know if Neridronate is a step in the right direction to research our options?

Heather,
I’ve had CRPS since 2013. I am not 15 (with my whole life ahead of me) but rather 55. When it comes to CRPS, my recommendation is to be slow and thoughtful and find a Dr. who has made this disease his lifes work, someone like Pradeep Chopra, Harvard/Brown Univ. (see youtube). You have to be your daughters best advocate.

Due to the USDA announcement last year pertaining to CRPS as a chronic disease, Dr’s from all directions are jumping onto the CRPS treatment bandwagon. Unfortunately, their time to meet with your daughter as a patient (typically 45 minutes tops), to diagnos not just her CRPS but potentially other underlying issues that are impacting her CRPS, and the subsequent medications and treatments that will be used based on a methodic review of her as a patient (with a rare, chronic disease), are completely guided by what insurance companies will pay for. NOT BY WHAT HAS BEEN SCIENTIFICALLY PROVEN TO WORK. Someone like Dr. Chopra is worth every dime your insurance company won’t pay for (an initial vist that last over half a day and costs around $700). He will work with your daughter to find the right compbination of medications and treatments. If that includes her participation in this trial he would help clarify the pro’s and con’s and they relate specifically to her.

But you must help your daughter understand that today that may mean getting her pain level to a place where she feels that she is more in control. CRPS pain can wax and wane, but it is always there at some level or another.

Thank you for your comments. The last sentence is not the case for some of my patients who have been in total remission for many years, zero pain even under extreme circumstances where they’ve gone back to sports or work. It’s not everyone, but it does exist. We just need funding for good studies.

Checking back! Just wrapped up two days of IV ketamine. Started @ 0.2mg/ kg body weight per hour, up to 0.4, but was too extreme. 2nd day stayed @0.3mg, but had to back down to 0.2 before I left. Unfortunately, I experienced such extreme vomiting and nausea after I left on day 2, I was unable to make day 3 and due to clinic policy, was not able to pick back up to finish the last 3 days. So…I got 2days in…and although I’m only a few days out, I have no allodynia, no constant pain signals, no temperature fluctuations, pretty much feeling normal. I do feel numbness, but that’s no big deal. Interestingly, I now feel pain in other parts of my body with nerve damage (but not CRPS), so whatever magic happened, it is still working on my R leg/groin.

Is it normal to have “dumps” of psychotropic sensations in the days/weeks following ketamine IV infusion? I will get occasional waves lasting many minutes, sometimes a few hours, of the dissasociative sensations, then it calms down.

I’ll be sure to let everyone know if these mere two days of infusion end up providing long term relief!

I am waiting to hear if I will be accepted into the US Neridronic Acid study here in California… docs can say whatever, but I was wondering if anyone can tell me what they have been experiencing and what side effects I should expect?
There isn’t a whole lot of info out there so I’m glad to find this thread and look forward to hearing back from any of you!

I had my first infusion yesterday. Got hit with severe flu-like symptoms about 12 hours later. It is like the worst case of the flu I’ve ever had, except no stuffed up head. Major joint pain, especially in joints I’ve had injuries to, and a deep ache in bones I’ve broken or had stress fractures in. Super major pain in the area I had my first ribs taken out and in my spinal fusion area. I suspect it all has to do with the bones taking in the medication.

Dr. Sajben is relocating Damon’s comment made on a separate post about bisphosphonates. It seems best as comment specifically on Neridronate:

Damon
3 days ago

I am in the neridronic acid phase lll study and have just received infusion 2 of 4. I have crps lll from a surgery 2 1/2 years ago. I was told I would experience the flu like symptoms also, which I did not. I have gotten severe joint and bone pain as a side effect, starting in my wrist and spreading to my shoulders and chest. Severe enough that it takes my breath away. I am in a support group for phase lll volunteers and this seems to be a common side effect. Will it be temporary? I hope so.

I just completed my fourth and final infusion of neirodronic acid at the research center. The side effects are tolerable as we’ve already been been dealing with the worst imaginable pain. I had some significant bone and muscle pain through the first couple of infusions. The exhaustion is still noteworthy a week after my last infusion. I’ve been hearing great things so I’m really excited for some relief.

Horrible, horrible side effects. Worse than my CRPS. Bone pain in every bone, joint pain in every joint, can’t hardly function. Last infusion was over a month ago. I kept going through all four because I was told the effects were temporary. How long is temporary????

All I can say is beware. This drug is not innocuous. I regret being involved in the study.

The side effects have been disabling, and now that I’m three months out from the trial, are now considered permanent (as per my rheumatologist). I can no longer work and can hardly function in daily life. My quality of life has been completely destroyed. This drug stole my life from me.

I went to Italy last September and received the Neridronate treatment in Bologna, Italy. Since being home, I’ve had 2 flares that were over within an hour and I’m back working in a critical care setudoing 3 12 hr shifts a week. I did trade the burning pain for muscular pain, but I’ll take it! I even started a page documenting my remission. I live in Indiana and the weather still wreaks havoc at tims. I have help answer many questions and help guid others. Please feel free to come and ask questions. Please remember we are all unique as CRPS is to each of us and even our recovery.

Hello Dr. Sajben,
I have decided to go to Italy for treatment for CRPS. I leave a week from today. I have had CRPS for 4 months and 15 days .
Mine started the day after rotator cuff surgery in my dominate right hand and left foot at the same time. I control the pain somewhat with the smallest dose of Morphine cut in half at night only when the pain is at its worst. Lately though I have had to take the second half of the pill to get the sleep I need to heal. I also faithfully do PT 2 times a day (even though it is extremely painful) and get in the hot tub sometime 2 times a day. I try to keep busy so my mind is not focused on the pain.
When I was first diagnosed with CRPS I researched all the treatments for it (which were only for SYMPTOMS) and not a cure here in the United States (which is typical in our country) since if disease is cured there is no money to be made by the big drug companies and hospitals. I soon realized neridronate treatment in Italy was the best chance I had. I also noted that usually only very young people had spontaneous remission possibly due to the high level of growth hormone in their bodies. I wonder if there has been any research using HCG on CRPS patients?
Thank you for posting this site as it has been informative for me.
Debra Lee

Neridronate is not a cure.
There is no known cure for CRPS.
It is only the financial incentive, the goal of making billions, charging far too much, and the knowledge there is no cure that drives new drug treatments.

This is Julie. My update is that my foot was almost in complete remission. I went to see a pain doctor who did the neuro exam and he got way too rough. My foot started to flare during the exam. It went from normal to purple and swollen. He moved so fast that I didn’t know if I should stop what was going on. Why was he even doing the exam when there has never been any doubt as to my diagnosis almost 4 years ago. He ended the exam with a Babinski reflex test. He pushed too hard under my arthrodesis under my 3rd metatarsal and cracked the bone. This was on December 21st. 2 weeks prior to that I had ran my first 5k in 4 years. I was going to see this doctor in hopes that lidocaine infusion would help me over the last hump of CRPS and help me to stop with the opioids. Now I have been set back years. I had forgot about the pain of CRPS and how it destroys lives. I know that it will heal, but it’s just a reminder that even with a remission, how easily we can go right back to the darkest pain. Do you know anything about lidocaine infusions? I’m still having luck with memantine and pentoxifylline. I was hoping that a sodium channel blocker might be the ticket. I have also been studying about something called NAV1.7 and 1.8. I’m hoping that those medications will bring the lives back to so many people who suffer with chronic pain. It’s exciting to hear all of the positive results with the neridronic acid. When I had my recent Xrays, I still don’t present with any osteopenia. Remember my foot was very osteopenic before my infusions in Italy. Thank you.

I’m part of the neridronic acid study in the states. It took almost 4 months after final infusion before I saw any difference. I didn’t think it was working then one day I realized I could wear a shoe on affected limb almost all day. Prior to that I couldn’t keep a,shoe on for even an hour. Now I’m at 8 months after infusions and most days, with my meds my pain is between a 1 – 4. Before it was 8 – 10 . I do have days where pain puts me in bed, but my high pain now not nearly as bad as before. Only side effect I had was sleeping a lot during infusion and for a few months after. I’m so glad I had it done.

Wonderful news! Thank you for your report. I am so happy for you and grateful you shared this for others to read.

We need to support research. Someday, we may even learn mechanisms, why this pain, why this works, why it works only in some.

Can’t wait to read the publications of data, but even if it works equally as well as placebo, it should be FDA approved so that we can learn mechanisms. How do we tell it’s the drug helping and not just the course that CRPS would have taken on its own?

This is Julie with an update. I am currently on my 5th lidocaine infusion. After my foot break in December, I was back to the drawing board with CRPS. In fact a pain doctor told me it was to be considered a new case of CRPS even though it was on the same foot. When I started the lidocaine infusions I was taking around 155 morphine equivalents. A combination of oxycodone and Vicodin. Now I’m down to 40 mgs of Vicodin and doing great. Stangely, as I was cutting down on the opioids, I noticed that the symptoms that affected my body outside of my CRPS foot were getting worse. For over 4 years, I’ve been told by doctors to push through the pain and to exercise. So I have done just that. The fatigue and muscle weakness and pain would really get out of control sometimes. As the months passed, I kept getting weaker and I would wake up in the middle of the night barely able to walk. It started in my quadriceps, hips, abdominal muscles and then my calves. After resting to watch TV or even sitting in a car, my muscles would freeze up. Sometimes I feel so heavy, that movement feels like I’m trying to move through water. This kept getting worse. The confusing part was that people online on CRPS websites and in my support groups told me they all have the same problems. They called it full body CRPS. I recently learned that this is utterly untrue. CRPS sometimes will spread up the limb. When I started the lidocaine infusions and my CRPS foot became amazingly better, almost pain free, I asked the amazing researcher that I’m working with about this “full body” CRPS. He told me that was absurd. He told me that CRPS does none of those things that had been happening to me. As it turns out, I have a disease called, primary periodic paralysis. A couple of months ago, I woke up with my legs paralyzed. My potassium levels were very low and would get even lower after exercising or other triggers. It’s possible that I had this genetic disease before my bunion surgery that cause the nerve damage in my foot and CRPS. The CRPS has been making my PPP worse. I have began treatment. Thank goodness that I met this doctor. Why do people want to have CRPS? Disability payments? Narcotic drugs? I don’t get it. Those people were not experiencing what I was even though they told me that they were. CRPS is not what some people think that it is. It’s very important not to fall into that trap of people telling you that they got it from nothing or that it has taken over their whole body. CRPS has a Budapest criteria for a reason and doctors should follow the guidelines. I went to a conference recently for CRPS and was shocked at how everyone there had got it from a work accident. Everyone that I know is on some type of payments from work. What is this the work disease? That makes it very difficult for those of us who really have this pain disease. Don’t think that everything that happens to your body is due to CRPS, that is a dangerous assumption. If you’re faking this disease for profit or drugs, please stop.

Dear Julie, Thank you so much for your update. It’s important to listen carefully to each person and not to assume one diagnosis fits all. Primary Periodic Paralysis and CRPS are both rare, each treated differently.

Injuries are a common initiating event for CRPS, whether at work or not. Unfortunately, once opioids are started, they cause inflammation which causes pain may lead to disability.